Thank you for sharing this, Bernard – as you say, it’s essential reading. While I wasn’t able to access the full article through the gift link, I managed to read it via my library’s e-Magazine app, which I recommend as a great free resource.

The article powerfully highlights the challenges faced by disabled individuals and their families. It is deeply concerning that some of the most vulnerable members of our society are unable to access the support and services they have been assessed as needing. Equally troubling is the stigmatisation and marginalisation of caregivers, whose invaluable dedication contributes billions of dollars in unpaid care yet often goes unrecognised.

Since the abrupt changes to disability support and services introduced under Penny Simmonds in March 2024, I’ve read and heard numerous accounts that echo the experiences shared in the article. The delays and uncertainty in addressing these systemic issues, as suggested by Minister Louise Upston’s comments, are disheartening. Unfortunately, it seems the Disability Community and support services sector may face a prolonged wait – potentially until mid-2025 or beyond – for any meaningful improvements. Given the coalition government’s approach, I share concerns about whether substantive progress will materialise.

Similarly, within the dementia and neurodegenerative disease community – including those of us affected by young-onset dementia – there is significant apprehension regarding the current funding model reviews under Casey Costello’s Associate Health Minister portfolio. These reviews, managed by Te Whatu Ora and the Health Committee, are long overdue or nearing completion. However, as reported last year and discussed in platforms like The Kākā, sector organisations remain concerned about the lack of clarity and urgency in addressing critical needs.

Home and Community Support Services for people with dementia, along with respite and residential care, fall under Ministry of Health and Te Whatu Ora policy and funding. These services rely on a similar government-mandated needs assessment process and produce care and support packages designed by NASC (Needs Assessment and Service Coordination) agencies, which closely align with the disability sector’s processes. While the COVID-era freedoms around what can be purchased remain in place, anecdotal evidence suggests that unofficial budget-related freezes are being used by NASCs to ration services. Similarly, residential care facilities are facing funding freezes until the completion of current reviews. Access to respite care has also become increasingly constrained, with long waiting lists for dementia-level residential care.

As with the disability community, these challenges significantly affect people with dementia and their families, who struggle to access the essential support they need. Consequently, developments in the disability sector may provide important insights into what the dementia community can expect in the future.

Thank you again for drawing attention to this issue. Articles like this not only shed light on the serious challenges faced by the disability community but also underscore the broader systemic issues impacting other vulnerable populations, including people with dementia and their families.